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Hi Hans, Charlie, Renee ad Kevin,
Thank you everyone for your comments and help!
I will try very hard to keep going as long as I can without surgery,
but it is also clear that Dr. Growdon did not know enough to advise me
about surgery, except to say that I am doing exceptionally well without
it. He was very honest and cordial, but I myself might
have made a mistake by expecting that he would know more than he did.
"Exceptionally well" is hard to accept, because I am so tired and always
battling.
I felt gloomy yesterday, to have made that difficult trip, and to not be
any clearer about what is best for me. Maybe I need some time to adjust.
Then hopefully I will feel more hopeful.
I am going to try to talk to the people who attended Dr. Cook's
presentation at the Newton-Wellesley YOPD support group. He apparently
spent 2 HOURS anwswering questions about DBS options. He operated on
Michael J. Fox.
Right this moment I must stop and take medicines again, to avoid going
off into pain
and dystonia.
I guess I will end up having more opinions before I know how to proceed.
Meanwhile,
Thanks again everyone for sharing your ideas and for your support!
Ivan
On Fri, 25 Jun 1999 17:39:20 +0200 Hans van der Genugten
<[log in to unmask]> writes:
>-----Oorspronkelijk bericht-----
>Van: Ivan M Suzman <[log in to unmask]>
>Aan: [log in to unmask] <[log in to unmask]>
>Datum: vrijdag 25 juni 1999 3:57
>Onderwerp: Re: 3rd opinion
>
>
>Hi Ivan,
>
>>> pallidotomy is for those with dyskinesias. <<
>>> He said that DBS is for "tremor control." <<
>
>It seems to me this dr.'s reaction is rather peculiar.
>DBS primarily for tremor control is nonsens, because he should then
>have
>specified about which DBS he was talking. It gives IMO much confusion
>just
>calling it DBS. There are in general THREE DBS's to consider: DBS of
>the GPi
>(globus pallidus internus), DBS of the Thalamus, and DBS of the STN.
>And you can choose between the pallidotomy (with an irreversible
>laesion),
>the thalamotomy (with an irreversible laesion), or one of the
>(reversible)
>DBS's of these areas.
>
>>> My problem- stiffness and severe offs, seemed to be not enough for
>him to
>recommend surgery. He suggested contacting the European doctors
>because they
>are more experienced <<
>
>IMO he is disqualifying himself on this subject.
>
>I think you should consider asking the (4th) opinion from yet another
>doctor
>(hopefully more knowledgable).
>
>Hans.
^^^^^^ WARM GREETINGS FROM ^^^^^^^^^^^^ :-)
Ivan Suzman 49/39/36 [log in to unmask] :-)
Portland, Maine land of lighthouses deg. F :-)
********************************************************************
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February 1996, Week 3 February 1996, Week 2 February 1996, Week 1 January 1996, Week 5 January 1996, Week 4 January 1996, Week 3 January 1996, Week 2 January 1996, Week 1 December 1995, Week 5 December 1995, Week 4 December 1995, Week 3 December 1995, Week 2 December 1995, Week 1 November 1995, Week 5 November 1995, Week 4 November 1995, Week 3 November 1995, Week 2 November 1995, Week 1 October 1995, Week 5 October 1995, Week 4 October 1995, Week 3 October 1995, Week 2 October 1995, Week 1 September 1995, Week 5 September 1995, Week 4 September 1995, Week 3 September 1995, Week 2 September 1995, Week 1 August 1995, Week 5 August 1995, Week 4 August 1995, Week 3 August 1995, Week 2 August 1995, Week 1 July 1995, Week 5 July 1995, Week 4 July 1995, Week 3 July 1995, Week 2 July 1995, Week 1 June 1995, Week 5 June 1995, Week 4 June 1995, Week 3 June 1995, Week 2 June 1995, Week 1 May 1995, Week 5 May 1995, Week 4 May 1995, Week 3 May 1995, Week 2 May 1995, Week 1 April 1995, Week 5 April 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Week 5 June 1994, Week 4 June 1994, Week 3 June 1994, Week 2 June 1994, Week 1 May 1994, Week 5 May 1994, Week 4 May 1994, Week 3 May 1994, Week 2 May 1994, Week 1 April 1994, Week 5 April 1994, Week 4 April 1994, Week 3 April 1994, Week 2 April 1994, Week 1 March 1994, Week 5 March 1994, Week 4 March 1994, Week 3 March 1994, Week 2 March 1994, Week 1 February 1994, Week 4 February 1994, Week 3 February 1994, Week 2 February 1994, Week 1 February 1994 January 1994 December 1993 November 1993
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